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Universal Human Rights and End-of-Life Care

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Advance Care Decision Making in Germany and Italy

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Abstract

Universal human rights like dignity, physical integrity, health, and freedom from torture or inhuman treatment have special relevance to the end-of-life debate and form the basis on which is built the emergence of new biorights. Over the last decades, such rights as the right to informed consent, the right to die with dignity, and the right not to suffer have gained increasing importance in the international legal order. These rights have also contributed to the setting of generally accepted human rights standards that offer authoritative guidance to both domestic legislators and judges. This is particularly important in light of the fact that the regulation of legal questions surrounding the end of life is quite different in domestic jurisdictions, even in a rather homogeneous and integrated region like Europe, where the relevant legal frameworks still differ according to cultural, ideological, and religious diversities and the more or less liberal attitude adopted by individual States, as it is the case with Germany and Italy. Moving from the above considerations, this chapter will discuss some critical aspects of end-of-life decision-making and care within the international human rights framework, with a view to disclosing the relevant legal standards and obligations that may serve as general reference and starting points for a comparison between national jurisdictions. This investigation could also open up the door to a more specific debate on the consistency of domestic legislation on end-of-life issues with international (biomedical and human rights) law.

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Notes

  1. 1.

    Advance care planning is a voluntary process of discussion about future care between an individual and their care providers, which might include the individual’s concerns and wishes, their important values or personal goals for care; their understanding about their illness and prognosis; their preferences and wishes for types of care or treatment that may be beneficial in the future and the availability of these.

  2. 2.

    On the issue whether “universal bioethical standards” can be translated into legal norms, see Ida (2004), pp. 376–377. According to this Author, “Although bioethics legislation exists at the national level … and at the regional level …, there are no international or universal legal rules. The diversity of values within each community is the main reason for this absence of universal legal instruments” (pp. 377–378).

  3. 3.

    Unesco, Universal Declaration on Bioethics and Human Rights, 19 October 2005.

  4. 4.

    Council of Europe, Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4 April 1997, ETS No. 164, entered into force on 1 December 1999 (hereinafter ‘Oviedo Convention’). The problems left unsolved by the Convention include the definition of the boundaries of patient autonomy, the refusal of treatments, and euthanasia: see Taupitz (2002b), p. 5.

  5. 5.

    In this sense, see Maljean-Dubois (2000), p. 92; Tancredi (2004) pp. 408–409; Campiglio (2012), p. 112.

  6. 6.

    See Byk (1999); Maljean-Dubois (2000), p. 93; Boschiero (2006), p. 13, 15; Mathieu (2006), p. 85; Andorno (2011), p. 75.

  7. 7.

    Loreti Beghè and Marini (2001), p. 44; Andorno (2002), p. 960; Boschiero (2006), p. 14.

  8. 8.

    See Andorno (2005b), p. 133. The Author states that the essence of some principles enunciated by the Oviedo Convention were already framed in more general terms in previous human rights treaties.

  9. 9.

    For example, the scope of the Oviedo Convention has thoroughly been debated in legal literature also with a view to assessing whether it can offer a pattern for global regulation of bioethical issues: see especially Taupitz (2002b). On the one hand, it is contended that the Convention seeks to promote the universal dimension of the biorights it enunciates and it is also remarked that the participation of Canada, the USA, Japan, Australia, the European Union, and the Holy See to its negotiation undoubtedly confers an added value to the alleged “universality” of its rules (see e.g. Millns (2007), p. 78; Gadd (2005); Boschiero (2006), p. 51). On the other hand, it is denied any “universal aspiration”, both because it is substantially a regional treaty with a very low rate of ratification and because its restrictive provisions make it unlikely that it will ever be ratified by third States (on this latter point, see Riedel (2002), pp. 37–38).

  10. 10.

    The Preambles to the Oviedo Convention and to the Unesco Universal Declarations both “solemnly recall […] the attachment to the universal principles of human rights”. See also the Explanatory Report to the Oviedo Convention, paragraphs 11–13.

  11. 11.

    Advance decision-making can take the form of either instructional directives, also known as living wills (providing specific instructions or setting out general principles to be followed for health care to be delivered when decision-making capacity has been lost), or proxy directives, also known as durable powers of attorney for health care (naming surrogate decision-makers such as proxies).

  12. 12.

    Article 9 of the Oviedo Convention reads “The previously expressed wishes relating to a medical intervention by a patient who is not, at the time of the intervention, in a state to express his or her wishes shall be taken into account”. On this provision, see the legal analysis carried out in this book in the chapter authored by Di Stasi and Palladino (2013).

  13. 13.

    See Negri (2011a), especially Part II: Advance directives, end-of-life decision-making, and euthanasia in comparative legal perspective.

  14. 14.

    The quote is from Wear (1992), Chapter two. The body of literature on informed consent is really vast. See, ex plurimis, Faden et al. (1986); Van Oosten (1991); Switankowsky (1998); Berg et al. (2001); Manson and O’Neill (2007); Casonato (2009); Maclean (2009). For deeper insights on the status of informed consent under international law, see Negri (2011c); Negri (2012).

  15. 15.

    Kollek (2009), p. 124.

  16. 16.

    Opinion of Justice Benjamin Cardozo, Schloendorff v. The Society of New York Hospitals (105 N.E. 92), Court of Appeals of New York, 14 April 1914.

  17. 17.

    The Nuremberg Code (1947) was printed in Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10, Washington, 1949, vol. 2, pp. 181–182. The first and best known provision of the Nuremberg Code stated: “The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, overreaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. …” Among the several relevant contributions, see Weindling (2004).

  18. 18.

    A collection of the relevant texts is reported in den Exter (2011).

  19. 19.

    WMA, International Code of Medical Ethics, adopted by the 3rd General Assembly of the World Medical Association, London, October 1949, as amended in 1968, 1983 and 2006.

  20. 20.

    WMA, Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects, adopted by the 18th World Medical Assembly, Helsinki, June 1964, as subsequently amended and revised up to October 2008.

  21. 21.

    WMA, Declaration on the Rights of the Patient, adopted by the 34th World Medical Assembly, Lisbon, September/October 1981, and amended by the 47th WMA General Assembly Bali, Indonesia, September 1995.

  22. 22.

    WHO/EURO, European Consultation on the Rights of Patients, Amsterdam 28–30 March 1994, A Declaration on the Promotion of Patients’ Rights in Europe, ICP/HLE 121, 28 June 1994 (hereinafter Amsterdam Declaration).

  23. 23.

    See Chapter II of the Oviedo Convention; see also Articles 13, 14 and 17 of the Additional Protocol to the Convention on Human Rights and Biomedicine concerning Transplantation of Organs and Tissues of Human Origin, Strasbourg, 24 January 2002, ETS No. 186, entered into force on 1 May 2006; Chapters IV and V of the Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Biomedical Research, Strasbourg, 25 January 2005, ETS No. 195, entered into force on 1 September 2007; Articles 9 to 15 of the Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Genetic Testing for Health Purposes, Strasbourg, 27 November 2008, ETS No. 203, not yet in force.

  24. 24.

    See Article 5 of the Universal Declaration on the Human Genome and Human Rights, 11 November 1997, and Articles 6 and 7 of the Universal Declaration on Bioethics and Human Rights, 19 October 2005. As far as the collection, use and storage of biological samples are concerned, see the Unesco International Declaration on Human Genetic Data, 16 October 2003, in particular Articles 8, 9 and 16.

  25. 25.

    WHO, Guidelines for Good Clinical Practice for Trials on Pharmaceutical Products (Geneva, 1995). See also the UN Special Rapporteur’s recommendations as formulated in his Report containing the Human Rights Guidelines for Pharmaceutical Companies in relation to Access to Medicines (U.N. Doc. A/63/263, 11 August 2008, paragraphs 21–22).

  26. 26.

    CIOMS-WHO, International Ethical Guidelines for Biomedical Research Involving Human Subjects (Geneva, 2002), Guideline 4, p. 32.

  27. 27.

    Directive 2001/20/EC of the European Parliament and of the Council of 4 April 2001 on the approximation of the laws, regulations and administrative provisions of the Member States relating to the implementation of good clinical practice in the conduct of clinical trials on medicinal products for human use, Official Journal of the European Communities, L 121/34, 1 May 2001.

  28. 28.

    On the concepts of ‘genuine consent’ or ‘understood consent’, see Bhutta (2004), pp. 773–774.

  29. 29.

    See Justice Cardozo in Schloendorff v. Society of New York Hospital, supra note 16: “a surgeon who performs an operation without his patient’s consent commits an assault, for which he is liable in damages”.

  30. 30.

    See Selinger (2009). It should be noted that, consistently with the exceptions stated in Articles 6 to 8, the Oviedo Convention does not include Article 5 among those non-derogable dispositions mentioned in Article 26, paragraph 2, while it only provides that no restrictions be placed on its protective provisions contained in Article 17, concerning persons not able to consent to research.

  31. 31.

    See Article 8 of the Oviedo Convention and paragraphs 56–58 of the Explanatory report; see also Amsterdam Declaration, paragraphs 3.4, 3.6, 3.7.

  32. 32.

    See Article 7 of the Oviedo Convention; Principle 11 of the United Nations Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care, General Assembly Resolution 46/119 of 17 December 1991; Progress of efforts to ensure the full recognition and enjoyment of the human rights of persons with disabilities, Report of the Secretary-General, U.N. Doc. A/58/181, 24 July 2003; Report of Paul Hunt, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, U.N. Doc. E/CN.4/2005/51, 11 February 2005 (hereinafter ‘Report 2005’).

  33. 33.

    See Article 6 of the Oviedo Convention and the Amsterdam Declaration, paragraph 3.5.

  34. 34.

    Amsterdam Declaration, paragraph 3.4.

  35. 35.

    Amsterdam Declaration, paragraph 3.6.

  36. 36.

    Amsterdam Declaration, paragraph 3.7; see also Explanatory report to the Oviedo Convention, paragraph 57.

  37. 37.

    See Article 9 of the Universal Declaration on the Human Genome and Article 6 of the Universal Declaration on Bioethics and Human Rights. According to Article 27 of the latter, such compelling reasons may include the need to protect public safety and public health, a situation that finds application in Article 23, paragraph 3, and Article 31, paragraph 2, of the International Health Regulations (2005), legitimising States to apply health measures to travellers, including compulsory examination and vaccination, when there is evidence of an imminent public health risk. However, it is interesting to note that the protection afforded by the International Covenant on Civil and Political Rights under Article 7 is even stricter than the one guaranteed by the norms of international biolaw, since that provision allows no derogations or limitation, not even in times of emergency (Article 4, paragraph 2).

  38. 38.

    See Article 26 of the Oviedo Convention, which however does not allow restrictions on the rules governing protection of persons not able to consent to research or to organ removal. These are considered ‘unconditional norms’ (see Andorno (2005b), p. 136).

  39. 39.

    Commission on Human Rights, Resolution 2003/69, Human rights and bioethics, adopted by consensus on 25 April 2003; Committee of Ministers, Recommendation R(99)4 to Member States on Principles Governing the Legal Protection of Incapable Adults, 23 February 1999, principle 28.

  40. 40.

    Compare the proviso in Articles 8 to 11 of the European Convention on Human Rights; Articles 12, 18–19, 21–22 of the International Covenant on Civil and Political Rights; Articles 12–13, 15–16 and 22 of the American Convention on Human Rights; Articles 11–12 of the African Charter on Human and Peoples’ Rights. The conditions of legitimacy of the restrictions placed on human rights are by now considered the object of a customary rule: see Fidler (2000), pp. 293–294.

  41. 41.

    International Covenant on Civil and Political Rights, adopted and opened for signature, ratification and accession by General Assembly Resolution 2200A (XXI), 16 December 1966, entered into force on 23 March 1976; CCPR, General Comment No. 20: Replaces general comment 7 concerning prohibition of torture and cruel treatment or punishment (Art. 7), 10 March 1992.

  42. 42.

    According to the Committee’s interpretation, Article 7 allows no limitations or derogations and implies that the Parties to the Covenant have a legal duty to guarantee protection through legislative and other measures against the acts prohibited by this provision, “whether inflicted by people acting in their official capacity, outside their official capacity or in a private capacity”. Moreover, as for the specific prohibition of non-consensual experimentations, the Committee argues that special protection is necessary with regard to persons not capable of giving valid consent, and in fact it recommends that “When there is doubt as to the ability of a person or a category of persons to give such consent, e.g. prisoners, the only experimental treatment compatible with article 7 would be treatment chosen as the most appropriate to meet the medical needs of the individual”. See General Comment No. 20, paragraphs 2 and 7; Consideration of Reports Submitted by States Parties under Article 40 of the Covenant: Concluding Observations of the Human Rights Committee: United States of America, U.N. Doc. CCPR/C/USA/CO/3, 15 September 2006, paragraph 31.

  43. 43.

    Unfortunately, there is no significant case law by the Human Rights Committee concerning violations of Article 7 for imposition of compulsory medication or experiments.

  44. 44.

    Convention on the Rights of Persons with Disabilities, New York, 13 December 2006, entered into force on 3 May 2008.

  45. 45.

    American Convention on Human Rights, San José, 22 November 1969, entered into force on 18 July 1978.

  46. 46.

    African (Banjul) Charter on Human and Peoples’ Rights, Nairobi, 27 June 1981, entered into force on 21 October 1986.

  47. 47.

    Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa, Maputo, 11 July 2003, entered into force on 25 November 2005.

  48. 48.

    It should be added that this protection had been earlier invoked by the Committee on the Elimination of Discrimination against Women in its General Recommendation No. 24 of 1999 concerning action by the States parties to the Convention on the Elimination of All Forms of Discrimination against Women, where the Committee stated that States Parties had to “Require all health services to be consistent with the human rights of women, including the rights to autonomy, privacy, confidentiality, informed consent and choice” (paragraph 31, al. e).

  49. 49.

    See Di Stasi and Palladino (2013).

  50. 50.

    On the relevant Strasbourg case-law, see Negri (2011c), pp. 46–49.

  51. 51.

    Dupuy (1979); Leary (1994); Hendriks (1998); Toebes (1999); Negri (2008, 2010); Riedel (2008); Robinson and Clapham (2009); Tobin (2012).

  52. 52.

    International Covenant on Economic, Social and Cultural Rights, adopted by General Assembly Resolution 2200A (XXI) of 16 December 1966, entered into force on 3 January 1976.

  53. 53.

    CESCR, General Comment No. 14 (2000) on the right to the highest attainable standard of health (article 12 of the International Covenant on Economic, Social and Cultural Rights), U.N. Doc. E/C.12/2000/4, 11 August 2000, paragraph 8. Another important element is access to health-related information for health decision-making (paragraphs 21–23) since information accessibility is a specific aspect of one of the four cornerstone elements of the right to health, namely availability, accessibility, acceptability, quality (paragraph 12).

  54. 54.

    Report 2005, paragraph 87.

  55. 55.

    Report 2005, paragraph 90.

  56. 56.

    Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Anand Grover, U.N. Doc. A/64/272, 10 August 2009 (hereinafter ‘Report 2009’), paragraph 9.

  57. 57.

    Report 2009, summary, p. 2 (emphasis added).

  58. 58.

    Report 2009, paragraphs 5, 18. This approach is consistent with the existence of indirect references to the rule of informed consent in the definition of State obligations stemming from Article 12 of the Covenant according to the traditional tripartite typology (to respect, protect, fulfil) employed in the language of the Committee, as well as in the relevant scholarship. In this respect see the indirect references to informed consent in General Comment No. 14, at paragraphs 34, 35, and 37: “obligations to respect include a State’s obligation to refrain … from applying coercive medical treatments, unless on an exceptional basis for the treatment of mental illness or the prevention and control of communicable diseases. Such exceptional cases should be subject to specific and restrictive conditions, respecting best practices and applicable international standards … In addition, States should refrain from … censoring, withholding or intentionally misrepresenting health-related information … as well as from preventing people’s participation in health-related matters. … The obligation to fulfil (promote) the right to health requires States to undertake actions that create, maintain and restore the health of the population. Such obligations include: … (iv) supporting people in making informed choices about their health.”

  59. 59.

    Report 2009, paragraphs 7, 93–94.

  60. 60.

    Human Rights Council, Resolution 15/22, 30 September 2010, paragraph 4 (o) (adopted by consensus).

  61. 61.

    See Negri (2011c).

  62. 62.

    See, however, Boschiero (2006), p. 53, who states that the ‘right to express an informed consent’ is codified in the Universal Declaration on Bioethics and Human Rights.

  63. 63.

    Boschiero (2006), p. 14.

  64. 64.

    Kollek (2009), p. 126. Similarly, see Millns (2007), p. 79, who argues that “fundamental bio-rights and freedoms are to be respected through the provisions governing the requirement to obtain an individual’s free and informed consent to medical interventions”, and again she speaks of “the general consent requirements imposed by articles 5 and 6” (pp. 79–80); however, when dealing with the Charter of Fundamental Rights of the European Union, she recognises free and informed consent as one of the four basic principles provided by Article 3, adding that the “remit of these is striking in its overlap with that of the principles enshrined in the Biomedicine Convention” (pp. 80–81).

  65. 65.

    See, for instance, Maljean-Dubois (2000), pp. 94–95; Boschiero (2006), p. 51. Andorno stresses the fact that in the Oviedo Convention, informed consent is “required for the first time as a general principle for any biomedical intervention”, Andorno (2005b), p. 136, 138.

  66. 66.

    Compare Tancredi (2004), p. 397, who observes that the ‘principle’ is considered the basis of the doctor–patient relationship, while, illustrating the relevant European case law, he refers to it as the ‘right in question’.

  67. 67.

    See e.g. Bompiani, Loreti Beghé, Marini, who define informed consent (as well as dissent), as the “expression” of the principles of autonomy and self-determination, while refusal of futile therapies is instead construed as a “right” (2001, p. 13).

  68. 68.

    See the Explanatory Report to the Oviedo Convention, especially paragraphs 34, 40, 48, 101, and 136.

  69. 69.

    See, respectively, Article 5 of the Declaration on the Human Genome and Human Rights and Article 6 of the Declaration on Bioethics and Human Rights. However, Article 9 of the former defined consent as a principle.

  70. 70.

    WMA, Declaration on the Rights of the Patient, paragraph 3b.

  71. 71.

    WMA, Declaration of Helsinki, paragraph 24.

  72. 72.

    Active Citizenship Network, Europe Charter on Patients’ Rights, Rome, November 2002, Article 4.

  73. 73.

    Report 2005, paragraph 90.

  74. 74.

    Report 2009, paragraph 5.

  75. 75.

    Report 2009, paragraphs 10, 20, 28, and 57.

  76. 76.

    For example, the Amsterdam Declaration took into account “a previous declared expression of will” to the effect of preventing, even in situations of urgent need, the performance of a medical intervention based on a presumed informed consent when, according to such previous will, it is clear that the patient would have refused consent (paragraph 3.3).

  77. 77.

    Committee of Ministers, Recommendation (2009)11 on principles concerning continuing powers of attorney and advance directives for incapacity, 9 December 2009; Parliamentary Assembly, Resolution 1859 (2012) on protecting human rights and dignity by taking into account previously expressed wishes of patients, 25 January 2012. See Andorno (2010), pp. 119–124, (2011); Di Stasi and Palladino (2013).

  78. 78.

    See, for example, Beširević (2010), p. 107: “the standards concerning the role of precedent autonomy in treating incompetent patients, guaranteed in Article 9 of the Oviedo Convention could, at least potentially, be implemented on a territory much wider than the territory of the Council of Europe Member States”.

  79. 79.

    European Parliament, Resolution of 14 January 2009 on the situation of fundamental rights in the European Union 2004–2008, Official Journal of the European Union, C 46E/08, 24 February 2010, pp. 48–69, paragraph 167 (emphasis added).

  80. 80.

    At least for adult competent patients, and where derogations due to emergency situations and public health interests do not apply, the non-derogable nature of informed consent is no longer controversial: see Wear (1992), p. 1.

  81. 81.

    See Europe Charter on Patients’ Rights, Article 4; Amsterdam Declaration, paragraph 3.2; Report 2009, paragraph 28; UN Mental Illness Principles, paragraph 4.

  82. 82.

    See Byk (2007).

  83. 83.

    Schabas (2009), p. 445; see also Negri (2011b).

  84. 84.

    See Orentlicher (1998).

  85. 85.

    The Human Rights Committee interpreted the right to life as “the supreme right from which no derogation is permitted”: Human Rights Committee, CCPR General Comment No. 6: The right to life (art. 6), 30 April 1982, paragraph 1.

  86. 86.

    See, in this respect, Article 15 of the European Convention on Human Rights, Article 4 of the International Covenant on Civil and Political Rights, and Article 27 of the American Convention on Human Rights.

  87. 87.

    See, for example, Article 6 of the International Covenant on Civil and Political Rights, Article 2 of the European Convention on Human Rights, Article 4 of the American Convention on Human Rights, and Article 4 of the African Charter on Human and Peoples’ Rights.

  88. 88.

    Human Rights Committee, Concluding Observations of the Human Rights Committee: Netherlands, CCPR/CO/72/NET, 27 August 2001 and Concluding Observations of the Human Rights Committee, CCPR/C/NLD/CO/4, 11 August 2009, paragraph 7.

  89. 89.

    Human Rights Committee, Consideration of Reports Submitted by States Parties under Article 40 of the Covenant: Concluding Observations of the Human Rights Committee: Switzerland, CCPR/C/CHE/CO/3, 3 November 2009.

  90. 90.

    Parliamentary Assembly, Verbatim Records: 2005 Ordinary Session (Second Part), 12th Sitting, Wednesday, 27 April 2005, e Doc.10455 on Assistance to Patients at End of Life, 9 February 2005.

  91. 91.

    Council of Europe, Parliamentary Assembly, Recommendation 779 (1976) on the rights of the sick and dying, 29 January 1976, paragraph 7; Resolution 613 (1976) on the rights of the sick and dying, 29 January 1976.

  92. 92.

    Parliamentary Assembly, Recommendation 1418 (1999) Protection of the human rights and dignity of the terminally ill and the dying, 25 June 1999, paragraph 9.c.

  93. 93.

    Parliamentary Assembly, Resolution 1859 (2012), supra note 77, paragraph 5.

  94. 94.

    This aspect was highlighted also by the Committee of Ministers: see Parliamentary Assembly, Doc. 9404, 8 April 2002, Protection of the human rights and dignity of the terminally ill and the dying, Recommendation 1418 (1999), Reply from the Committee of Ministers, adopted at the 790th meeting of the Ministers’ Deputies (26 March 2002), paragraph 11.

  95. 95.

    See Schabas (2009), p. 445. In principle, the Strasbourg Court excluded the admissibility of derogations from Article 2 different from those expressly provided therein (McCann and others v. the United Kingdom, no. 18984/91, judgment of 27 September 1995, paragraph 147); however, the Commission had previously found that the failure of the Swiss legislator to criminalise passive euthanasia was not incompatible with Articles 2 and 8 of the Convention (European Commission on Human Rights, Widmer v. Switzerland, no. 20527/92, decision of 10 February 1993). The relevant cases decided by the Court are Pretty v. the United Kingdom, no. 2346/02, judgment of 29 April 2002; Haas v. Switzerland, no. 31322/07, judgment of 20 January 2011; Koch v. Germany, no. 497/09, judgment of 19 July 2012, Gross v. Switzerland, no. 67810/10, judgment of 14 May 2013.

  96. 96.

    Focarelli (2009), paragraphs 30–31.

  97. 97.

    See Andorno (2005a, 2009); Di Stasi (2011).

  98. 98.

    According to Chapman (2011), pp. 3–4: “[w]hile human dignity is a powerfully evocative and widely accepted concept, it is elusive as to its precise meaning and requirements… there is the distinct possibility that not only the term human dignity may convey a multiplicity of understandings, it may even be referring to different things. … A lack of clarity about the meaning of human dignity can relegate the concept to be used as little more than rhetorical dressing.”

  99. 99.

    Chapman (2011), p. 5, 10, and 12.

  100. 100.

    Mathieu (2005), p. 72.

  101. 101.

    See, in this sense, Amarasekara and Bagaric (2002).

  102. 102.

    Pretty v. the United Kingdom, supra note 95, paragraph 63.

  103. 103.

    Pretty v. the United Kingdom, supra note 95, paragraph 65.

  104. 104.

    Pretty v. the United Kingdom, supra note 95, paragraph 67.

  105. 105.

    Haas v. Switzerland, supra note 95, paragraph 51.

  106. 106.

    Haas v. Switzerland, supra note 95, paragraph 61.

  107. 107.

    Gross v. Switzerland, supra note 95, paragraphs 63–69.

  108. 108.

    Sepúlveda et al (2002).

  109. 109.

    In fact, dissemination of palliative care and pain management has been conducted for several years through the work of both governmental organisations and NGOs, such as the WHO, the Joint United Nations Programme on HIV/AIDS (UNAIDS), the International Association for the Study of Pain (IASP), the International Association for Hospice and Palliative Care (IAHPC), the Global Alliance for Palliative Care (WPCA), the European (EAPC), Latin-American (ALCP) and African (APCA) Palliative Care Associations, and many other national associations operating in this sector. See Astudillo et al (2009).

  110. 110.

    WHO (1990).

  111. 111.

    WHO (2002).

  112. 112.

    Fernández (2007), p. 145. See also Stjernswärd and Clark (2005).

  113. 113.

    The holistic approach that characterises palliative care is consistent with the definition of health provided in the WHO Constitution: “Health is a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity”. See Preamble of the Constitution of the World Health Organization, adopted by the International Health Conference held in New York from 19 June to 22 July 1946, signed on 22 July 1946 by the representatives of 61 States in force from April 7, 1948, and amended by resolutions WHA26.37, WHA29.38, WHA51.23 WHA39.6 and the World Health Assembly

  114. 114.

    General Comment No. 14, paragraphs 34 and 25, respectively.

  115. 115.

    Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/63/263, 11 August 2008, paragraph 50.

  116. 116.

    Thematic study on the realization of the right to health of older persons by the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Anand Grover, A/HRC/18/37, 4 July 2011, paragraph 60.

  117. 117.

    CESCR, General Comment No. 3, The nature of States parties obligations (Art. 2, paragraph 1 of the Covenant), 14 December 1990, paragraph 9.

  118. 118.

    General Comment No. 14, paragraph 43.

  119. 119.

    See also Brennan (2007), p. 495.

  120. 120.

    Lohman et al (2010). Since access to medicines is an integral and fundamental element of the right to health, governments and the international community as a whole have a responsibility to provide such access to everyone. The primary responsibility for expanding access to medicines rests, in any case, on the States. See Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health—Expert consultation on access to medicines as a fundamental component of the right to health, A/HRC/17/43, 16 March 2011; Human Rights Council, Resolution 15/22, The right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/HRC/RES/15/22, 6 October 2010. See also Brennan et al (2007), pp. 207–209; Gwyther et al (2009), pp. 770–771. For a comprehensive analysis of the obstacles to the provision of pain treatment and palliative care, see Human Rights Watch, “Please, do not make us suffer any more…” Access to Pain Treatment as a Human Right, 3 March 2009, pp. 19–43, 47–50, available at http://www.hrw.org/reports/2009/03/02/please-do-not-make-us-suffer-any-more.

  121. 121.

    De Lima et al (2007).

  122. 122.

    Heilmann (2010, 2011).

  123. 123.

    Single Convention on Narcotic Drugs, signed in New York on March 30, 1961, in force since December 13, 1964.

  124. 124.

    Convention on Psychotropic Substances, signed in Vienna on 21 February 1971.

  125. 125.

    INCB, Report of the International Narcotics Control Board for 1995: Availability of Opiates for Medical Needs, available at http://www.incb.org/pdf/e/ar/1995/suppl1en.pdf.

  126. 126.

    INCB, Report of the International Narcotics Control Board for 1999: Freedom from Pain and Suffering, available at http://www.incb.org.

  127. 127.

    Joint report by WHO and INCB, Assistance Mechanism to Facilitate Adequate Treatment of Pain with Opioid Analgesics, 2 March 2007.

  128. 128.

    Economic and Social Council of the United Nations, Resolution 2005/25, Treatment of pain using opioid analgesics, 22 July 2005.

  129. 129.

    World Health Assembly, Resolution WHA 58.22, Cancer Prevention and Control, 25 May 2005.

  130. 130.

    UNODC, Political Declaration and Plan of Action on International Cooperation towards an Integrated and Balanced Strategy to Counter the World Drug Problem, 12 March 2009.

  131. 131.

    Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/65/255, 6 August 2010, paragraph 42.

  132. 132.

    Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/65/255, 6 August 2010, paragraphs 76–77.

  133. 133.

    The right to freedom from torture and inhuman or degrading treatment is also recognised by regional conventions: see Article 3 of the European Convention for the Protection of Human Rights and Fundamental Freedoms of 1950; Article 5 paragraph 2 of the American Convention on Human Rights of 1969; Article 5, paragraph 2 of the African Charter on Human and Peoples’ Rights of 1981; Article 4 of the Charter of Fundamental Rights of the European Union of 2000. According to Somerville, failure to treat pain is also a violation of patients’ autonomy and their right to self-determination: Somerville (1994); Amon and Lohman (2011).

  134. 134.

    Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Manfred Nowak, A/HRC/10/44, 14 January 2009, paragraphs 72, 74 e).

  135. 135.

    Joint Statement of the Special Rapporteur on the question of torture and the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health to the Chairperson of the of the 52nd Session of the Commission on Narcotic Drugs, 12 December 2008, paragraph 3, p. 4.

  136. 136.

    Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, A/HRC/22/53, 1 February 2013, p. 13, paragraph 54.

  137. 137.

    European Commission on Human Rights, Tanko v. Finland, no. 23634/94, decision of 13 May 1994; European Court of Human Rights, McGlinchey and Others v. the United Kingdom, no. 50390/99, judgment of 29 April 2003; see also N. v. the United Kingdom, no. 26565/05, judgment of 27 May 2008, where the Grand Chamber stated that “a lack of medical and palliative care … might be equally relevant to the finding of a separate potential violation of Article 3 of the Convention” (paragraph 21).

  138. 138.

    Council of Europe, Recommendation Rec(2003) 24 on the organization of palliative care, adopted by the Committee of Ministers on November 12, 2003; see also Recommendation 1418 (1999), supra note 92.

  139. 139.

    Brennan et al (2007), pp. 210–211: “Frustrated by the slow pace of medical, cultural, legal, and political change, many within the community of pain clinicians have begun to promote the status of pain management beyond that of appropriate clinical practice or even an ethic of good medicine. They advocate nothing less than a paradigm shift in the medical professions’ perspective on pain management from simply good practice to an imperative founded on patient rights.”

  140. 140.

    Veronesi (2011), pp. 18–19. According to Brennan et al (2007), p. 210: “If there is a clear ethical duty to relieve suffering or to act virtuously by doing so, then one may argue that from that duty springs a right. The moral right to pain management emerges from, and is directly founded upon, the duty of the doctor to act ethically”.

  141. 141.

    Somerville (1992); “to leave a person in avoidable pain and suffering should be regarded as a serious breach of fundamental human rights” (Somerville 1995); “the relief of severe, unrelenting pain would come at the top of a list of basic human rights” (Cousins 1999).

  142. 142.

    Brennan et al (2007), p. 205.

  143. 143.

    Brennan (2007), p. 494.

  144. 144.

    See, for example, The Declaration on the promotion of patients’ rights in Europe of 1994; the European Charter of Patients’ Rights of 2002; the Cape Town Declaration of 2002; the Declaration of Korea of 2005; the Montreal Statement on the Human Right to Essential Medicines of 2005; the Joint Declaration and Statement of Commitment on Palliative Care and Pain Treatment as Human Rights of 2008.

  145. 145.

    Chapter VIII of the Oviedo Convention articulates the obligations incumbent on States Parties to guarantee a right to justice through the provision of an appropriate judicial protection for unlawful infringements and threats of infringement of the rights and principles set therein (Article 23), the adoption of sanctioning measures (Article 25), and the effective guarantee of redress (Article 24). Article 29 only confers on the European Court the competence to deliver advisory opinions on general legal questions concerning the interpretation of the Convention independently of any judicial proceedings pending before national courts (see also the Explanatory Report, paragraphs 164–165).

  146. 146.

    See, for example, Negri (2013).

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  1. Department of Legal Sciences, School of Law, University of Salerno, Fisciano, Salerno, Italy

    Stefania Negri

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    Stefania Negri

  2. IMGB, University of Mannheim, Mannheim, Baden-Württemberg, Germany

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  3. IMBG, University of Mannheim, Mannheim, Baden-Württemberg, Germany

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  4. IMGB, University of Mannheim, Mannheim, Baden-Württemberg, Germany

    Anna Zwick

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Negri, S. (2013). Universal Human Rights and End-of-Life Care. In: Negri, S., Taupitz, J., Salkić, A., Zwick, A. (eds) Advance Care Decision Making in Germany and Italy. Veröffentlichungen des Instituts für Deutsches, Europäisches und Internationales Medizinrecht, Gesundheitsrecht und Bioethik der Universitäten Heidelberg und Mannheim, vol 41. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-40555-6_1

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